Cancer Investigation, 9(5), 571-579 (1991)
SPECIAL SECTION ON CANCER SURVIVORSHIP
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Susan Leigh, R.N., B.S.N.* and Catherine Logan, B.S.t *Cancer Survivorship Consultant Tucson, Arizona tNational Coalition for Cancer Survivorship Albuquerque, New Mexico
INTRODUCTION
currently receiving more attention within the allied health professions and lay community. No matter what the eventual medical outcome, psychosocial, economic, and legal issues are being recognized as important components of recovery or quality survival (3), and these issues are being addressed by a multitude of individuals, professionals, and organizations. The emergence of more informed and assertive healthcare consumers with more optimistic expectations of survival has increased the demands to address quality of life issues when dealing with cancer (4). Yet financial constraints and acute care priorities in treatment centers often preclude accessibility to adequate and continued nonmedical supportive services. Consequently, from grassroots levels across the country to regional and national organizations, cancer survivors, along with family members and healthcare providers, are responding to the newly identified needs of this ever-increasing population. They are forming groups, producing publications, and developing networks and organizations that specifically deal with cancer survivorship issues. Due to the diversity of these activities, an attempt has been made to unify and coordinate the multiple components of this embryonic “movement.” With the founding of the National Coalition
In 1991 it is estimated that 6.3 million Americans are alive after a diagnosis of cancer, 65 % of whom have lived 5 years or longer after diagnosis (1). This population is growing as a result of advances in earlier detection and treatment, more effective treatment options through ongoing research, and, some may say, more knowledgeable healthcare consumerism. Whether or not they are completely free of disease, are in extended remission, are living with cancer as a chronic illness, or are still in treatment, this group of current and former cancer patients are proclaiming themselves cancer survivors. * While news of increasing survival rates is encouraging, care must be taken to address the new set of potential problems surrounding anticipated or actual longerterm survival (2). The obligations of healthcare professionals now extend beyond acute care and optimistic hope for prolonged lifespans, to careful and systematic monitoring of the side effects of the disease and therapy. Biomedical concerns of disease control, recurrence, and long-term and late effects of therapy remain in the realm of the medical profession, while the nonmedical issues of cancer survival, those which impact quality of life, are *Cancer survivor is defined here as anyone with a history of cancer from the time of diagnosis and for the remainder of life.
571 Copyright 0 I991 by Marcel Dekker, Inc.
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for Cancer Survivorship (NCCS), there is now an organization that functions as a national clearinghouse for information, resources, networking, and advocacy for all those affected by cancer.
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MUTUAL AID AND PEER SUPPORT In the past ten years, cancer support and mutual aid groups have developed in a number of communities across the country. These groups have emerged independently in response to the significant and special needs of the growing cancer survivor population. Often led by persons who are themselves cancer survivors, many of these groups have developed high levels of expertise in identiQing and dealing with psychosacial issues faced by cancer survivors. These groups continue to develop throughout the country. Most of them are small, local units; many are neighborhoodcancer support groups that meet in homes, churches, or medical centers. Others have evolved into community organizations or nonprofit corporations with a variety of educational and support programs requiring staff, facilities, and sophisticated fund raising activities. The programs developed by these community organizations reflect the experienceand wisdom of those who have “been there,” and who understand the concerns and issues of the survivor population frompersonal experience. Most of the programs concentrate on emotional support and education through peer support (mutual aid groups), oneto-one peer support, hot lines, workshops and conferences, lending libraries, and publications. These are valuable resources both for the survivors and their loved ones, as well as for the referring medical community. Perhaps the most important product of these groups, whether they be smaU support groups or larger community organizations, is the network of uncounted numbers of survivors and their families. This network is crucial to the survivorshipmovement because it enables individual survivors to plug into the movement in a personal way. The names of these organizationstell the story of their independent development and also reflect their common goals. Names such as CAnCare of Charlotte, North Carolina, the Cancer Support Network of Pennsylvania, and SHARE (Support Has A Reinforcing Effect) of St. Louis, Missouri, indicate a common goal of emotional support. Life After Cancer-Pathways of Ashville, North Carolina, the Cancer Guidance Institute of Pittsburgh, Pennsylvania, and Operation Uplift of Port Angeles, Washington are names that tell of a commitmentto quality living. The names Living Through Cancer of
Albuquerque, New Mexico, Vital Options and Cancervive, both California-based groups, indicate a proactive approach to living well after a cancer diagnosis. Each name reflects the unique creativity of the originatorsalong with a common survivorship mission. In addition to this rich variety of grassroots mutual aid organizations, a number of survivor groups and services are offered by social service agencies. The American Cancer Society has a number of strong survivor-tosurvivor programs, including Reach to Recovery, I Can Cope, Cansurmount, and local varieties of support groups. American Cancer Society groups have been the pioneers and the main-stay in survivor-to-survivor programs in many communities. Meanwhile, the Leukemia Society of America has traditionally worked with a large pediatric population and their families, and have been at the forefront of recognizing and dealing with the long-tern survivor issues of children. In 1989,they introduced a publication entitled Coping with Survival. Also, social work agencies such as Cancer Care in New York City, and counseling agencies, such as the Medical Illness Counseling Center in Chevy Chase, Maryland, have incorporated peer support programs into their service-related offerings. Medical centers, too, provide a large number of survivor-to-survivor activities. Some, such as the “Surviving” group at Stanford University Medical Center in Palo Alto,California, have long been on the cutting edge of the survivorship movement. Other outstanding programs include the “Post Treatment Resource Center” at Memorial Sloan-Kettering in New York City, and “We Can Weekend,” developed by Judi Johnson at the North Cancer Center at North Memorial Medical Center in Minneapolis. Scores of other hospitals, as well, have cancer support groups. Although some regions have more activity than others, survivorship programs, such as those listed above, are now common throughout the country. For instance, the New Jersey Self-Help Center lists more than 50 cancerrelated mutual aid organizations under a variety of sponsorships in New Jersey alone. California has literally hundreds of cancer support activities, while other states like Arizona, the Dakotas,Nevada, and Utah, have only a few. Despite the uneven distribution, there has emerged throughout the country as a whole a viable national movement of support and survivorshiporganizationsfor cancer survivors. In addition to the activities in local communities, a number of national organizations have evolved that focus on the needs and issues of specific segments of the survivor population. Same of these national organizationsare
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The Cancer Survivorship Movement
themselves veterans of the mutual aid movement, and provide successful models for new groups. For example, the Ostomy Association, founded in 1962, is a national organization which provides rehabilitation assistance to persons who have ostomies, many of whom are cancer survivors. The national organization was formed after a number of local ostomy mutual aid groups had developed independently, and has grown from 28 to more than 670 groups. Another veteran among survivorship organizations is the Candlelighters Childhood Cancer Foundation which celebrated its twentieth birthday during the summer of 1990. Although Candlelighterswas originally founded in Washington, D.C., to lobby for the rights of pediatric cancer survivors and their families, it has spawned 300 local mutual aid organizations for families of children with cancer. A recent addition to the list of national organizations that serve specific segments of the cancer survivor population is the National Alliance of Breast Cancer Organizations (NABCO). Founded in 1986, it serves as a resource for individuals and organizations concerned with breast cancer, and it works to influence public and private policy concerning insurance, funding priorities, and health legislation dealing with breast cancer. In March 1991, NABCO was the lead organizationin the formation of The Breast Cancer Coalition, a nationwide breast cancer advocacy effort that will focus attention on breast cancer and will involve breast cancer patients and their supporters as advocates for action, advances, and change. Make Today Count, founded by Orville Kelly in 1974 as a support organization to address the emotional needs of those with cancer and life-threatening illness, grew in the late 1970s and early 1980s to an organization with over 350 chapters. Even though the number of chapters now total only about one third that number, Make Today Count remains one of the largest cancer support organizations in the country. In addition to these national organizations, a number of local independent organizations have branched out into new communities and sometimes new states. Y-Me, a grassroots support organizationfor breast cancer survivors based in Homewood, Illinois, and the Wellness Community in Santa Monica, California, are two such organization that have enfranchised successful counterparts in other states. Other organizations have developed as national networks without a basic infrastructure of local groups. Let’s Face It, which originally operated out of Concord, Massachusetts was primarily a resource network for persons with facial disfigurement, many of whom were
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cancer survivors. It recently combined forces with AboutFace in Canada, and thus increased its resources and strengthened its network. Another survivor-to-survivor network is Patient Advocates for Advanced Cancer Treatment (PAACT). It offers information on all aspects of detection, diagnosis and treatment of prostate cancer, and currently has more than 4OOO survivors on its mailing list. Both AboutFace and PAACT publish newsletters that tie individuals into national networks. Many other organizations, both local and national, have newsletters and periodicals which are excellent sources of information and support to group members. These publications also provide access to resouTces for those who are unable to attend or are not inclined to participate in groups. Most notable in this respect are the Candlelighters Childhood Cancer Foundation’s quarterly publications and NAABCO News published by the National Alliance of Breast Cancer Organizations. In addition, a number of local support organizations produce newsletters and other publications, such as “Surviving! which is produced by the survivors themselves at Stanford University Medical Center. Information regarding other survivorship resources, including publications and other helpful educational materials, can be requested from the organizations listed in Table 1. These organizations are genuinely diverse. While some are small and informal networks, others are incorporated organizations. Many are independent; others are sponsored by institutionsor national organizations. Most focus on emotional support, while some focus on self-care as a supplement to treatment. Still others focus on education, information or advocacy. There is, however, one common thread that is basic to all these groups: the basic element of peer support, the survivor-to-survivor COM~Ction that creates both the historical foundation and the ongoing core of the survivorship movement. ”
THE NATIONAL SURVIVORSHIP AGENDA Today, as never before, cancer survivors and their families are searching for information, talking with each other, and sharing experiencesand resources. While many prefer one-on-one contact, others are meeting in small support groups, are affiliating with community organizations, or are becoming involved in national organizations. With the support of loved ones and healthcare providers, survivors are developing a national survivorship agenda that is a reflection of how they themselves define the important issues they face. The following is a list of some of the issues on that agenda.
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Table 1 National Survivorship Resources
About Face Suite 1405, 123 Edward Street Toronto, Ontario, Canada M5G 1E2 (416) 593-7420
sodm
American Cancer see your local yellow pages 1 (800) ACS-2345
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Candlelighters Childhood Cancer Foundation 1312 18th Street, NW Suite 200 Washington, Dc 20036 (202)659-5136 (800) 366-CCCF
International Association of Laryngectomees call the local ACS first or contact IAL:
North American network for people with facial disfigurement; newsletter; other publications
Services vary from one commuNty to another; publications, support groups and one-one-one assistance with equipment and prosthesis, transportation, housing, advocacy Local support groups; youth and family newsletters, other publications, advocacy
Newsletter, local support groups, directory of instructors of Alaryngeal Speech publications
c/o American Cancer Society 1599 Clifton Road, NE Atlanta, GA 30329 (404)320-3333
Leukemia Society of America
Local support groups, publications
733 Third Avenue New York, NY 10017 (212) 573-8484 Make Today Count, Inc. P.O. Box 6033 Kansas City, KS (913) 281-8400 (Jan Jester)
Local support groups for all those with life-threatening illness
NABCO National Alliance of Breast Cancer Organizations 1180 Avenue of the Americas, 2nd Floor New York, NY 10036 (212) 719-0154
Newsletter, advocacy, bibliography
National Brain Tumor Foundation 323 Geary Street, Suite 510 San Francisco, CA 94102 (415) 296-0404
Information and support to brain tumor survivors and their families, resource guide
NCCS
Referral to local support groups, quarterly periodical, advocacy, annual national survivorship conference, collection and dissemination of information, publications
National Coalition for Cancer Survivorship 323 Eighth Street SW Albuquerque, NM 87102 (505) 764-9956
(continued)
The Cancer Survivorship Movement
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(continued)
National Lymphedema Network 2211 Post Street, Suite 404 San Francisco, CA 94115 1 (800) 541-3529
National hot line, newsletter, information on locating or starting local support groups
PAACT Patient Advocates for Advanced Cancer Treatment P.O. Box 1656 Grand Rapids, MI 49501 (616) 453-1477
Newsletter, other information on prostate cancer treatment
SURVIVING c/o Stanford University Medical Center Radiation Oncology, Radiation Therapy, Room A035 300 Pasteur Drive Stanford, CA 94035 (415) 723-7881
Survivor-produced periodical of personal experiences
United Ostomy Association
Newsletter, local ostomy support groups
36 Executive Park, Suite 120
Irvine, CA 92714 (714) 660-8624 Well Spouse Foundation 8768 West Barkhurst Drive Pittsburgh, PA 15237 (412) 821-5746 (Home # of Central Welcomer)
Newsletter, support groups, advocacy
Y-Me 18220 Harwood Ave. Homewood, IL 60430 (312) 799-8338 1-(800)221-2141
24-Hour national hot line, breast cancer support and information
1. Health Maintenance, beyond the diagnosis and treatment of the disease, is a major concern for most survivors. This is not a population which takes health for granted. If a breakdown in health can happen once, it can happen again. Thus there is often an increased sensitivity to healthier lifestyles, such as improved nutrition, stress management, exercise, and for many, spiritual well-being. The desire to maintain optimal health may, in part, be an attempt to regain control over one’s life. Although this increased awareness of health may be seen by some as almost hypochondriacal obsession, it may be more fairly described as a hyperalertness to one’s health and well-being. Additionally, the anxiety of living with fears of recurrence and late effects of treatment can take its toll. Ade-
quate long-term follow-up with thorough medical examinations by qualified specialists can do much to calm the anxiety as well as track residual problems and possible complications. Treatment and stage-specific educational materials, along with a variety of counseling and supportive services, would also help to alleviate fears and enhance quality survival. 2. Informed consumerism becomes a continuing issue for cancer survivors and their families. From the moment of diagnosis, knowledge of the complex medical issues and the medical system plays a decisive part in the quality of care, the abiLity to make appropriate decisions (some that must be made almost immediately), and the level of psychological comfort. Yet most survivors begin as novices in the medical arena, with little or no knowledge
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about cancer or the effective use of medical resources. Although access to information is a primary concern for many survivors, few medical facilities have the resources to provide the in-depth information many survivors are seeking. When information is available, learning to make the most of medical resources and to communicateeffectively with medical personnel takestime and experience. This is true even for the veteran survivor who has a broader base of knowledge about cancer as well as accumulated skill at maneuvering within the medical system. Remaining abreast of the latest developmentsin treatment or looking for information on the late effects of therapy requires a considerable investment of time and energy. 3. Psychosocial issues range from the personal emotional turmoil that is so often associated with facing the possibility of death and the fear of recurrence, to dealing with social isolation. The reality of cancer usually changes one’s entire perception of both self and the world, and it may trigger an emotional and/or spiritual crisis. Although a cancer diagnosis has potential for personal growth as well as distress, more often than not it is experienced as a major life crisis. The individual with cancer (and sometimes the entire family), may become isolated from those who are part of their normal support system. Co-workers and friends may not know how to respond to the threat of suffering and death. As a result the survivor and/or the family may be shunned. The stigma of cancer, still profound in our society, creates a pervasive stereotypeof the cancer survivor as “victim.” This has the potential to strain relationships and generate emotional isolation even from those who are trying to remain supportive (5). 4. Legal andfiMncia1issues remain predominantconcerns in cancer survivorship. Approximately 25% of all survivors experience employment discriminationof some sort, including discrimination in hiring, denial of promotion, forced disability status, exclusion from benefits, and dismissal without reasonable cause (6). Survivors may also face barriers in adoption proceedings and in securing loans. (See the accompanyingarticle by B. Hofhan for a more in-depth coverage of employment discrimination.) Meanwhile, one of the most difficult and widespread economic problems that cancer survivors and their families face is obtaining or retaining health and life insurance (7). Survivors with existing policies often hold on to them at any cost. They may become locked into a job (or even an unhappy marriage) in order to maintain insurance coverage. Many survivors who had no coverage at the time of
diagnosis or who forfeited their coverage due to loss of employment have little hope of obtaining coverage. Frequently, long-term survivors are unable to acquire new policies even though they survived with no evidence recurrence for five or more years after treatment. 5 . Research in the area of survivorship warrants increasing attention. Funding priorities have historically favored medical research dealing with diagnosis and treatment. In recent years, the area of cancer prevention and control has accrued funding for research and program development. Now the area of survivorshipwarrants additional research funds. Survivorship issues in general have been grossly understudied;there is a great need for more qualitative research, especially looking at the continuing process of survival (8). The study of long-term survivors may hold the key to unanswered questions surrounding current and future clinical trials. 6 . Outreach to underserved sunivorpopulations is of vital importance to the future of the survivorship movement. In spite of the impressive work that has already been done, the majority of survivors in most communities are not actively involved. While many individuals remain uninformed about existing resources, in many communities local resources are simply not available. Although some survivorsexpress no interest in pursuing such resources, many feel a need for information and support that is not readily available. Through a recent study assessing the needs of cancer survivors, the Canadian Cancer Society found that in communities without adequate resources there are significant numbers of survivors who would like to have services such as support groups and visitation programs (9). Unfortunately, most survivors are still facing their disease and treatment alone. This is especially true of small towns and rural areas, as well as inner city neighborhoods where poor and minority populations reside. In communitieswhere resources are available, few programs address the needs of long-term survivors as the majority of supportive programs are designed for those in treatment. Reaching the huge population of underserved survivors will test the viability of the survivorshipmovement within the next 10 years.
SURVIVORS UNITE With a common interest in cancer survivorship, 22 persons representingthemselves, their organizations,or their professions gathered in Albuquerque, New Mexico, in October 1986, to explore the issues of living after a cancer diagnosis. Most of this group had personal histories of
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The Cancer Survivorship Movement
the disease. All were involved in providing services to current and former cancer patients and their families but were uninformed about most of the programs and groups developing around the country. They discovered that limited resources were being wasted in duplication of efforts because there was no method or structure to link existing and newly evolving groups, to stimulate the development of new supportive activities, or to share educational materials. Furthermore, there was no organized group representing the concerns of the adult survivor population in the political arena, to government organizations like the National Cancer Institute, or to the national media. Discussions at this meeting confirmed the need for a national network to coordinate the widespread and diverse survivorship activities and to represent the concerns of survivors on a national level. At this gathering, in response to this need the National Coalition for Cancer Survivorship (NCCS) was founded (10).
SEMANTICS OF SURVIVAL The first step in developing this national networking organization was to carefully define the target population. A cancer survivor had traditionally been defined as one who lived five or more years beyond diagnosis (1). If there was no recurrence during this time period, and individual would graduate to a “cured” survivor status with an anticipated normal life expectancy. No qualifications were made as to the type and stage of disease, the response to treatment, the age of the person at diagnosis, or any of the other multiple variables associated with favorable prognoses. Those living with cancer as a chronic illness or with advanced disease were denied “survivor” status and left “in limbo” even though many lived for years after diagnosis. And many whose disease recurred after five years were angered at being misled. For purposes of medical research, objective and quantifiable parameters continue to be necessary in order to answer scientific questions concerning disease survival. Yet, as a diagnosis of cancer is no longer an automatic death sentence, the potential for long-term survival has become more tangible. Thus the population of survivors themselves is increasingly more concerned with the quality of their lives during and after cancer treatment. While attention to psychosocial support and quality of life issues has increased in the acute care setting, the needs of longerterm survivors continue to be unrecognized or given low priority.
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A model of surviving cancer in stages was first proposed by Mullan ( l l ) , introducing an ongoing, dynamic process of living through and beyond diagnosis. These “seasons of survival” are described as acute, extended, and permanent stages. The acute stage begins at diagnosis and extends through the initial strenuous medical treatment. In this stage, most of the individual’s energies are focused on physical survival, and dealing with the effects of treatment. As a “cancer patient,” many are facing their own mortality for the first time. During this stage, available support systems are often responsive to both the patientlsurvivor and the family unit. The extended stage of survival begins when initial treatments subside, often with abrupt severance of treatment-based support systems. Concurrently, support from family members and friends may also diminish. Survivors often feel as if they have been “set adrift,” and this can be an awkward and frightening time with conflicting reactions to one’s survival. While thankful to be alive, there can be difficulty returning to the “real” world. There may be residual physical effects from the disease and/or treatment, and unanticipated psychological effects ranging from minor anxiety to more severe depression and isolation. Although no longer a patient, one is not yet entirely healthy. The final or permanent stage of survival is roughly equivalent to “cure,” and has been described as a gradual “process of moving from surviving to thriving” (12). Because few researchers have studied this stage, the potential to investigate long-term cancer survival is unlimited, especially if adequate funding becomes available. Difficulties during this stage include socioeconomicproblems and long-term and late effects of therapy. A more dynamic definition of cancer “survivor” has evolved from these stages of survival. A cancer survivor is anyone with a history of cancer: “From the time of its discovery and for the balance of life, an individual diagnosed with cancer is a survivor” (13). Cancer survival then begins at the moment of diagnosis and proceeds along a continuum from one stage to another. Thus, the newly diagnosed are included in this survivor population along with those who are still in treatment, off treatment and in remission, on maintenance therapy, nearing death, or living long-term with no evidence of disease or recurrence. Because cancer’s impact is felt by many in addition to the survivors themselves, the concept of “survivorship” extends to include even a broader constituency. Survivorship is “the experience of living through cancer, which
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includes individualswith cancer, their families, significant others, care providers, and others in the social setting” (10). It may be of interest to note that within the membership of NCCS itself there is an equal distributionof those with and those without personal cancer histories (14). This includeshealth care providers who understand the importance of survivors, themselves, filling many of the leadership roles in the survivorship movement, and who also play an important role as the primary source for distribution of information about survivorshipand referral to appropriate resources. Many active participants in the survivorship movement have dual identities as both cancer survivors and healthcare professionals, and thus bring a special combination of commitment and expertise into leadership positions. Yet another group of dedicatedprofessionalswithin the realm of cancer survivorship are cancer survivors from all walks of life who are taking on leadership positions within the movement. Although not healthcareproviders by training, many have developed expertise in survivorship issues and programs. They are executive directors of survivor organizations, founders of cancer communities, authors and consultants on survivorship issues, and lawyers fighting discrimination. Their dedication stems from personal investment and passion for change.
Leigh and Logan
expertise and experience, and in doing so, have become valuable resources to each other. This process is augmented by the participation of knowledgeable healthcareproviders. As leaders come together to develop the national survivorship agenda and strategies, they emerge with a broader understanding of all aspects of survivorship. Still some may believe it premature to call this heightened interest and awareness of survivorship issues a “movement.” Yet, according to Webster, a movement is defined as “a series of organized activities by people working concertedly toward some goal” (15). With this definition in mind, a cancer survivorshipmovement can truly be identified, and NCCS is increasingly being recognized as one of its leaders (16). Organizing on a national level allows the many independent components of the survivorship movement to gain strength in numbers and to create a unified voice for the cancer survivor population. With the ever increasing survivor population and with the vast array of programs and activities addressing survivorshipissues, there lies an opportunity for creating a powerful movement. The multitudeof individuals, groups, and organizations, within the survivorshipmovement has taken on the challenge of fulfilling the potential and changing forever the experience of surviving cancer.
Address reprint requests to:Catherine Logan, NCCS, 323 Eighth Street SW, Albuquerque, NM 87102.
NCCS CONTRIBUTIONS TO SURVIVORSHIP These new “semantics of cancer survival” and the broader definition of survivorship and its constituency have emanated from NCCS, and are now being incorporated into much of the lay and professional literature. They represent a major philosophical contribution from NCCS to survivorship. Another major NCCS contribution to the survivorship community has been its networkingof diverse components and fragmented activities into a unified and coordinated survivorship movement. This has created a consolidated voice on behalf of survivors concerns with a strong impact as NCCS represents survivors before Congressional committees, with the National Cancer Institute and with national media. An important part of that contribution has been the development and maturation of national leadership. Through many of the NCCS networking activities, and especially the annual conference, individuals and groups have been provided a structure and impetus to share their
REFERENCES 1. Locan C: We are between 6-7 million strong. NCCS Networker 5:2, 1991. 2. Loescher L, Welch-McCafffey D, Leigh S et al: Surviving adult cancers, Part 1: Physiologic effects. Ann Intern Med 3:411-432, 1989. 3. Hoffman B: Current issues of cancer survivorship. Oncology 3~85-88,1989. 4. Spingam ND: The new breed of survivors. Coping Magazine 3:25-27, 1989. 5. Welch-McCfiy D, Hoffman B, Loescher L et al: Surviving adult cancer, Part 2: Psychosocial implications. Ann Intern Med 3~517-524, 1989. 6. Hoffman B: Cancer survivors at work: Job problems and illegal discrimination. Oncol Nurs Forum 16:39-43, 1989. 7. Crothers H: Health insurance: Problems and solutions for people living with cancer histories. In Proceedings of the 5th Narional Conference on Human Values and CMcer. San Francisco. American Cancer Society, 1987, pp 100-109. 8. Carter B: Cancer survivorship:A topic for nursing research. Oncol Nurs Forum 16:435-437, 1989.
The Cancer Survivorship Movement 9. The needs of people living with cancer in Prince Edward Island.
14. Rowland J. Prehnhry clues: constituent profile. NCCS Networker
Canadian Cancer society, 1989. NCCS newsletter. 1:l-3, 1987. Mullan F: Seasons of survival: reflections of a physician with cancer. N Engl J Med 313:270-273, 1985. Dow KH: The enduring seasons in survival. Oncol Nurs Forum 17:511-516, 1990. Charter of the National Coalition for Cancer Survivorship(NCCS).
3:2, 1989. 15. Websrer’sNew World Dici’onary, 2nd College Edition. Simon and Schuster, New York, 1984. 16. State of the Art Paper No. 2: Issues of cancer survivors and options for OCC involvement. National Cancer Institute(NCT) Office of Cancer Communications (OCC), 1988.
10. 11. 12. 13.
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SPECIAL SECTION ON CANCER SURVIVORSHIP
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Susan Leigh, R.N., B.S.N.* and Catherine Logan, B.S.t *Cancer Survivorship Consultant Tucson, Arizona tNational Coalition for Cancer Survivorship Albuquerque, New Mexico
INTRODUCTION
currently receiving more attention within the allied health professions and lay community. No matter what the eventual medical outcome, psychosocial, economic, and legal issues are being recognized as important components of recovery or quality survival (3), and these issues are being addressed by a multitude of individuals, professionals, and organizations. The emergence of more informed and assertive healthcare consumers with more optimistic expectations of survival has increased the demands to address quality of life issues when dealing with cancer (4). Yet financial constraints and acute care priorities in treatment centers often preclude accessibility to adequate and continued nonmedical supportive services. Consequently, from grassroots levels across the country to regional and national organizations, cancer survivors, along with family members and healthcare providers, are responding to the newly identified needs of this ever-increasing population. They are forming groups, producing publications, and developing networks and organizations that specifically deal with cancer survivorship issues. Due to the diversity of these activities, an attempt has been made to unify and coordinate the multiple components of this embryonic “movement.” With the founding of the National Coalition
In 1991 it is estimated that 6.3 million Americans are alive after a diagnosis of cancer, 65 % of whom have lived 5 years or longer after diagnosis (1). This population is growing as a result of advances in earlier detection and treatment, more effective treatment options through ongoing research, and, some may say, more knowledgeable healthcare consumerism. Whether or not they are completely free of disease, are in extended remission, are living with cancer as a chronic illness, or are still in treatment, this group of current and former cancer patients are proclaiming themselves cancer survivors. * While news of increasing survival rates is encouraging, care must be taken to address the new set of potential problems surrounding anticipated or actual longerterm survival (2). The obligations of healthcare professionals now extend beyond acute care and optimistic hope for prolonged lifespans, to careful and systematic monitoring of the side effects of the disease and therapy. Biomedical concerns of disease control, recurrence, and long-term and late effects of therapy remain in the realm of the medical profession, while the nonmedical issues of cancer survival, those which impact quality of life, are *Cancer survivor is defined here as anyone with a history of cancer from the time of diagnosis and for the remainder of life.
571 Copyright 0 I991 by Marcel Dekker, Inc.
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for Cancer Survivorship (NCCS), there is now an organization that functions as a national clearinghouse for information, resources, networking, and advocacy for all those affected by cancer.
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MUTUAL AID AND PEER SUPPORT In the past ten years, cancer support and mutual aid groups have developed in a number of communities across the country. These groups have emerged independently in response to the significant and special needs of the growing cancer survivor population. Often led by persons who are themselves cancer survivors, many of these groups have developed high levels of expertise in identiQing and dealing with psychosacial issues faced by cancer survivors. These groups continue to develop throughout the country. Most of them are small, local units; many are neighborhoodcancer support groups that meet in homes, churches, or medical centers. Others have evolved into community organizations or nonprofit corporations with a variety of educational and support programs requiring staff, facilities, and sophisticated fund raising activities. The programs developed by these community organizations reflect the experienceand wisdom of those who have “been there,” and who understand the concerns and issues of the survivor population frompersonal experience. Most of the programs concentrate on emotional support and education through peer support (mutual aid groups), oneto-one peer support, hot lines, workshops and conferences, lending libraries, and publications. These are valuable resources both for the survivors and their loved ones, as well as for the referring medical community. Perhaps the most important product of these groups, whether they be smaU support groups or larger community organizations, is the network of uncounted numbers of survivors and their families. This network is crucial to the survivorshipmovement because it enables individual survivors to plug into the movement in a personal way. The names of these organizationstell the story of their independent development and also reflect their common goals. Names such as CAnCare of Charlotte, North Carolina, the Cancer Support Network of Pennsylvania, and SHARE (Support Has A Reinforcing Effect) of St. Louis, Missouri, indicate a common goal of emotional support. Life After Cancer-Pathways of Ashville, North Carolina, the Cancer Guidance Institute of Pittsburgh, Pennsylvania, and Operation Uplift of Port Angeles, Washington are names that tell of a commitmentto quality living. The names Living Through Cancer of
Albuquerque, New Mexico, Vital Options and Cancervive, both California-based groups, indicate a proactive approach to living well after a cancer diagnosis. Each name reflects the unique creativity of the originatorsalong with a common survivorship mission. In addition to this rich variety of grassroots mutual aid organizations, a number of survivor groups and services are offered by social service agencies. The American Cancer Society has a number of strong survivor-tosurvivor programs, including Reach to Recovery, I Can Cope, Cansurmount, and local varieties of support groups. American Cancer Society groups have been the pioneers and the main-stay in survivor-to-survivor programs in many communities. Meanwhile, the Leukemia Society of America has traditionally worked with a large pediatric population and their families, and have been at the forefront of recognizing and dealing with the long-tern survivor issues of children. In 1989,they introduced a publication entitled Coping with Survival. Also, social work agencies such as Cancer Care in New York City, and counseling agencies, such as the Medical Illness Counseling Center in Chevy Chase, Maryland, have incorporated peer support programs into their service-related offerings. Medical centers, too, provide a large number of survivor-to-survivor activities. Some, such as the “Surviving” group at Stanford University Medical Center in Palo Alto,California, have long been on the cutting edge of the survivorship movement. Other outstanding programs include the “Post Treatment Resource Center” at Memorial Sloan-Kettering in New York City, and “We Can Weekend,” developed by Judi Johnson at the North Cancer Center at North Memorial Medical Center in Minneapolis. Scores of other hospitals, as well, have cancer support groups. Although some regions have more activity than others, survivorship programs, such as those listed above, are now common throughout the country. For instance, the New Jersey Self-Help Center lists more than 50 cancerrelated mutual aid organizations under a variety of sponsorships in New Jersey alone. California has literally hundreds of cancer support activities, while other states like Arizona, the Dakotas,Nevada, and Utah, have only a few. Despite the uneven distribution, there has emerged throughout the country as a whole a viable national movement of support and survivorshiporganizationsfor cancer survivors. In addition to the activities in local communities, a number of national organizations have evolved that focus on the needs and issues of specific segments of the survivor population. Same of these national organizationsare
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themselves veterans of the mutual aid movement, and provide successful models for new groups. For example, the Ostomy Association, founded in 1962, is a national organization which provides rehabilitation assistance to persons who have ostomies, many of whom are cancer survivors. The national organization was formed after a number of local ostomy mutual aid groups had developed independently, and has grown from 28 to more than 670 groups. Another veteran among survivorship organizations is the Candlelighters Childhood Cancer Foundation which celebrated its twentieth birthday during the summer of 1990. Although Candlelighterswas originally founded in Washington, D.C., to lobby for the rights of pediatric cancer survivors and their families, it has spawned 300 local mutual aid organizations for families of children with cancer. A recent addition to the list of national organizations that serve specific segments of the cancer survivor population is the National Alliance of Breast Cancer Organizations (NABCO). Founded in 1986, it serves as a resource for individuals and organizations concerned with breast cancer, and it works to influence public and private policy concerning insurance, funding priorities, and health legislation dealing with breast cancer. In March 1991, NABCO was the lead organizationin the formation of The Breast Cancer Coalition, a nationwide breast cancer advocacy effort that will focus attention on breast cancer and will involve breast cancer patients and their supporters as advocates for action, advances, and change. Make Today Count, founded by Orville Kelly in 1974 as a support organization to address the emotional needs of those with cancer and life-threatening illness, grew in the late 1970s and early 1980s to an organization with over 350 chapters. Even though the number of chapters now total only about one third that number, Make Today Count remains one of the largest cancer support organizations in the country. In addition to these national organizations, a number of local independent organizations have branched out into new communities and sometimes new states. Y-Me, a grassroots support organizationfor breast cancer survivors based in Homewood, Illinois, and the Wellness Community in Santa Monica, California, are two such organization that have enfranchised successful counterparts in other states. Other organizations have developed as national networks without a basic infrastructure of local groups. Let’s Face It, which originally operated out of Concord, Massachusetts was primarily a resource network for persons with facial disfigurement, many of whom were
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cancer survivors. It recently combined forces with AboutFace in Canada, and thus increased its resources and strengthened its network. Another survivor-to-survivor network is Patient Advocates for Advanced Cancer Treatment (PAACT). It offers information on all aspects of detection, diagnosis and treatment of prostate cancer, and currently has more than 4OOO survivors on its mailing list. Both AboutFace and PAACT publish newsletters that tie individuals into national networks. Many other organizations, both local and national, have newsletters and periodicals which are excellent sources of information and support to group members. These publications also provide access to resouTces for those who are unable to attend or are not inclined to participate in groups. Most notable in this respect are the Candlelighters Childhood Cancer Foundation’s quarterly publications and NAABCO News published by the National Alliance of Breast Cancer Organizations. In addition, a number of local support organizations produce newsletters and other publications, such as “Surviving! which is produced by the survivors themselves at Stanford University Medical Center. Information regarding other survivorship resources, including publications and other helpful educational materials, can be requested from the organizations listed in Table 1. These organizations are genuinely diverse. While some are small and informal networks, others are incorporated organizations. Many are independent; others are sponsored by institutionsor national organizations. Most focus on emotional support, while some focus on self-care as a supplement to treatment. Still others focus on education, information or advocacy. There is, however, one common thread that is basic to all these groups: the basic element of peer support, the survivor-to-survivor COM~Ction that creates both the historical foundation and the ongoing core of the survivorship movement. ”
THE NATIONAL SURVIVORSHIP AGENDA Today, as never before, cancer survivors and their families are searching for information, talking with each other, and sharing experiencesand resources. While many prefer one-on-one contact, others are meeting in small support groups, are affiliating with community organizations, or are becoming involved in national organizations. With the support of loved ones and healthcare providers, survivors are developing a national survivorship agenda that is a reflection of how they themselves define the important issues they face. The following is a list of some of the issues on that agenda.
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Table 1 National Survivorship Resources
About Face Suite 1405, 123 Edward Street Toronto, Ontario, Canada M5G 1E2 (416) 593-7420
sodm
American Cancer see your local yellow pages 1 (800) ACS-2345
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Candlelighters Childhood Cancer Foundation 1312 18th Street, NW Suite 200 Washington, Dc 20036 (202)659-5136 (800) 366-CCCF
International Association of Laryngectomees call the local ACS first or contact IAL:
North American network for people with facial disfigurement; newsletter; other publications
Services vary from one commuNty to another; publications, support groups and one-one-one assistance with equipment and prosthesis, transportation, housing, advocacy Local support groups; youth and family newsletters, other publications, advocacy
Newsletter, local support groups, directory of instructors of Alaryngeal Speech publications
c/o American Cancer Society 1599 Clifton Road, NE Atlanta, GA 30329 (404)320-3333
Leukemia Society of America
Local support groups, publications
733 Third Avenue New York, NY 10017 (212) 573-8484 Make Today Count, Inc. P.O. Box 6033 Kansas City, KS (913) 281-8400 (Jan Jester)
Local support groups for all those with life-threatening illness
NABCO National Alliance of Breast Cancer Organizations 1180 Avenue of the Americas, 2nd Floor New York, NY 10036 (212) 719-0154
Newsletter, advocacy, bibliography
National Brain Tumor Foundation 323 Geary Street, Suite 510 San Francisco, CA 94102 (415) 296-0404
Information and support to brain tumor survivors and their families, resource guide
NCCS
Referral to local support groups, quarterly periodical, advocacy, annual national survivorship conference, collection and dissemination of information, publications
National Coalition for Cancer Survivorship 323 Eighth Street SW Albuquerque, NM 87102 (505) 764-9956
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National Lymphedema Network 2211 Post Street, Suite 404 San Francisco, CA 94115 1 (800) 541-3529
National hot line, newsletter, information on locating or starting local support groups
PAACT Patient Advocates for Advanced Cancer Treatment P.O. Box 1656 Grand Rapids, MI 49501 (616) 453-1477
Newsletter, other information on prostate cancer treatment
SURVIVING c/o Stanford University Medical Center Radiation Oncology, Radiation Therapy, Room A035 300 Pasteur Drive Stanford, CA 94035 (415) 723-7881
Survivor-produced periodical of personal experiences
United Ostomy Association
Newsletter, local ostomy support groups
36 Executive Park, Suite 120
Irvine, CA 92714 (714) 660-8624 Well Spouse Foundation 8768 West Barkhurst Drive Pittsburgh, PA 15237 (412) 821-5746 (Home # of Central Welcomer)
Newsletter, support groups, advocacy
Y-Me 18220 Harwood Ave. Homewood, IL 60430 (312) 799-8338 1-(800)221-2141
24-Hour national hot line, breast cancer support and information
1. Health Maintenance, beyond the diagnosis and treatment of the disease, is a major concern for most survivors. This is not a population which takes health for granted. If a breakdown in health can happen once, it can happen again. Thus there is often an increased sensitivity to healthier lifestyles, such as improved nutrition, stress management, exercise, and for many, spiritual well-being. The desire to maintain optimal health may, in part, be an attempt to regain control over one’s life. Although this increased awareness of health may be seen by some as almost hypochondriacal obsession, it may be more fairly described as a hyperalertness to one’s health and well-being. Additionally, the anxiety of living with fears of recurrence and late effects of treatment can take its toll. Ade-
quate long-term follow-up with thorough medical examinations by qualified specialists can do much to calm the anxiety as well as track residual problems and possible complications. Treatment and stage-specific educational materials, along with a variety of counseling and supportive services, would also help to alleviate fears and enhance quality survival. 2. Informed consumerism becomes a continuing issue for cancer survivors and their families. From the moment of diagnosis, knowledge of the complex medical issues and the medical system plays a decisive part in the quality of care, the abiLity to make appropriate decisions (some that must be made almost immediately), and the level of psychological comfort. Yet most survivors begin as novices in the medical arena, with little or no knowledge
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about cancer or the effective use of medical resources. Although access to information is a primary concern for many survivors, few medical facilities have the resources to provide the in-depth information many survivors are seeking. When information is available, learning to make the most of medical resources and to communicateeffectively with medical personnel takestime and experience. This is true even for the veteran survivor who has a broader base of knowledge about cancer as well as accumulated skill at maneuvering within the medical system. Remaining abreast of the latest developmentsin treatment or looking for information on the late effects of therapy requires a considerable investment of time and energy. 3. Psychosocial issues range from the personal emotional turmoil that is so often associated with facing the possibility of death and the fear of recurrence, to dealing with social isolation. The reality of cancer usually changes one’s entire perception of both self and the world, and it may trigger an emotional and/or spiritual crisis. Although a cancer diagnosis has potential for personal growth as well as distress, more often than not it is experienced as a major life crisis. The individual with cancer (and sometimes the entire family), may become isolated from those who are part of their normal support system. Co-workers and friends may not know how to respond to the threat of suffering and death. As a result the survivor and/or the family may be shunned. The stigma of cancer, still profound in our society, creates a pervasive stereotypeof the cancer survivor as “victim.” This has the potential to strain relationships and generate emotional isolation even from those who are trying to remain supportive (5). 4. Legal andfiMncia1issues remain predominantconcerns in cancer survivorship. Approximately 25% of all survivors experience employment discriminationof some sort, including discrimination in hiring, denial of promotion, forced disability status, exclusion from benefits, and dismissal without reasonable cause (6). Survivors may also face barriers in adoption proceedings and in securing loans. (See the accompanyingarticle by B. Hofhan for a more in-depth coverage of employment discrimination.) Meanwhile, one of the most difficult and widespread economic problems that cancer survivors and their families face is obtaining or retaining health and life insurance (7). Survivors with existing policies often hold on to them at any cost. They may become locked into a job (or even an unhappy marriage) in order to maintain insurance coverage. Many survivors who had no coverage at the time of
diagnosis or who forfeited their coverage due to loss of employment have little hope of obtaining coverage. Frequently, long-term survivors are unable to acquire new policies even though they survived with no evidence recurrence for five or more years after treatment. 5 . Research in the area of survivorship warrants increasing attention. Funding priorities have historically favored medical research dealing with diagnosis and treatment. In recent years, the area of cancer prevention and control has accrued funding for research and program development. Now the area of survivorshipwarrants additional research funds. Survivorship issues in general have been grossly understudied;there is a great need for more qualitative research, especially looking at the continuing process of survival (8). The study of long-term survivors may hold the key to unanswered questions surrounding current and future clinical trials. 6 . Outreach to underserved sunivorpopulations is of vital importance to the future of the survivorship movement. In spite of the impressive work that has already been done, the majority of survivors in most communities are not actively involved. While many individuals remain uninformed about existing resources, in many communities local resources are simply not available. Although some survivorsexpress no interest in pursuing such resources, many feel a need for information and support that is not readily available. Through a recent study assessing the needs of cancer survivors, the Canadian Cancer Society found that in communities without adequate resources there are significant numbers of survivors who would like to have services such as support groups and visitation programs (9). Unfortunately, most survivors are still facing their disease and treatment alone. This is especially true of small towns and rural areas, as well as inner city neighborhoods where poor and minority populations reside. In communitieswhere resources are available, few programs address the needs of long-term survivors as the majority of supportive programs are designed for those in treatment. Reaching the huge population of underserved survivors will test the viability of the survivorshipmovement within the next 10 years.
SURVIVORS UNITE With a common interest in cancer survivorship, 22 persons representingthemselves, their organizations,or their professions gathered in Albuquerque, New Mexico, in October 1986, to explore the issues of living after a cancer diagnosis. Most of this group had personal histories of
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the disease. All were involved in providing services to current and former cancer patients and their families but were uninformed about most of the programs and groups developing around the country. They discovered that limited resources were being wasted in duplication of efforts because there was no method or structure to link existing and newly evolving groups, to stimulate the development of new supportive activities, or to share educational materials. Furthermore, there was no organized group representing the concerns of the adult survivor population in the political arena, to government organizations like the National Cancer Institute, or to the national media. Discussions at this meeting confirmed the need for a national network to coordinate the widespread and diverse survivorship activities and to represent the concerns of survivors on a national level. At this gathering, in response to this need the National Coalition for Cancer Survivorship (NCCS) was founded (10).
SEMANTICS OF SURVIVAL The first step in developing this national networking organization was to carefully define the target population. A cancer survivor had traditionally been defined as one who lived five or more years beyond diagnosis (1). If there was no recurrence during this time period, and individual would graduate to a “cured” survivor status with an anticipated normal life expectancy. No qualifications were made as to the type and stage of disease, the response to treatment, the age of the person at diagnosis, or any of the other multiple variables associated with favorable prognoses. Those living with cancer as a chronic illness or with advanced disease were denied “survivor” status and left “in limbo” even though many lived for years after diagnosis. And many whose disease recurred after five years were angered at being misled. For purposes of medical research, objective and quantifiable parameters continue to be necessary in order to answer scientific questions concerning disease survival. Yet, as a diagnosis of cancer is no longer an automatic death sentence, the potential for long-term survival has become more tangible. Thus the population of survivors themselves is increasingly more concerned with the quality of their lives during and after cancer treatment. While attention to psychosocial support and quality of life issues has increased in the acute care setting, the needs of longerterm survivors continue to be unrecognized or given low priority.
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A model of surviving cancer in stages was first proposed by Mullan ( l l ) , introducing an ongoing, dynamic process of living through and beyond diagnosis. These “seasons of survival” are described as acute, extended, and permanent stages. The acute stage begins at diagnosis and extends through the initial strenuous medical treatment. In this stage, most of the individual’s energies are focused on physical survival, and dealing with the effects of treatment. As a “cancer patient,” many are facing their own mortality for the first time. During this stage, available support systems are often responsive to both the patientlsurvivor and the family unit. The extended stage of survival begins when initial treatments subside, often with abrupt severance of treatment-based support systems. Concurrently, support from family members and friends may also diminish. Survivors often feel as if they have been “set adrift,” and this can be an awkward and frightening time with conflicting reactions to one’s survival. While thankful to be alive, there can be difficulty returning to the “real” world. There may be residual physical effects from the disease and/or treatment, and unanticipated psychological effects ranging from minor anxiety to more severe depression and isolation. Although no longer a patient, one is not yet entirely healthy. The final or permanent stage of survival is roughly equivalent to “cure,” and has been described as a gradual “process of moving from surviving to thriving” (12). Because few researchers have studied this stage, the potential to investigate long-term cancer survival is unlimited, especially if adequate funding becomes available. Difficulties during this stage include socioeconomicproblems and long-term and late effects of therapy. A more dynamic definition of cancer “survivor” has evolved from these stages of survival. A cancer survivor is anyone with a history of cancer: “From the time of its discovery and for the balance of life, an individual diagnosed with cancer is a survivor” (13). Cancer survival then begins at the moment of diagnosis and proceeds along a continuum from one stage to another. Thus, the newly diagnosed are included in this survivor population along with those who are still in treatment, off treatment and in remission, on maintenance therapy, nearing death, or living long-term with no evidence of disease or recurrence. Because cancer’s impact is felt by many in addition to the survivors themselves, the concept of “survivorship” extends to include even a broader constituency. Survivorship is “the experience of living through cancer, which
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includes individualswith cancer, their families, significant others, care providers, and others in the social setting” (10). It may be of interest to note that within the membership of NCCS itself there is an equal distributionof those with and those without personal cancer histories (14). This includeshealth care providers who understand the importance of survivors, themselves, filling many of the leadership roles in the survivorship movement, and who also play an important role as the primary source for distribution of information about survivorshipand referral to appropriate resources. Many active participants in the survivorship movement have dual identities as both cancer survivors and healthcare professionals, and thus bring a special combination of commitment and expertise into leadership positions. Yet another group of dedicatedprofessionalswithin the realm of cancer survivorship are cancer survivors from all walks of life who are taking on leadership positions within the movement. Although not healthcareproviders by training, many have developed expertise in survivorship issues and programs. They are executive directors of survivor organizations, founders of cancer communities, authors and consultants on survivorship issues, and lawyers fighting discrimination. Their dedication stems from personal investment and passion for change.
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expertise and experience, and in doing so, have become valuable resources to each other. This process is augmented by the participation of knowledgeable healthcareproviders. As leaders come together to develop the national survivorship agenda and strategies, they emerge with a broader understanding of all aspects of survivorship. Still some may believe it premature to call this heightened interest and awareness of survivorship issues a “movement.” Yet, according to Webster, a movement is defined as “a series of organized activities by people working concertedly toward some goal” (15). With this definition in mind, a cancer survivorshipmovement can truly be identified, and NCCS is increasingly being recognized as one of its leaders (16). Organizing on a national level allows the many independent components of the survivorship movement to gain strength in numbers and to create a unified voice for the cancer survivor population. With the ever increasing survivor population and with the vast array of programs and activities addressing survivorshipissues, there lies an opportunity for creating a powerful movement. The multitudeof individuals, groups, and organizations, within the survivorshipmovement has taken on the challenge of fulfilling the potential and changing forever the experience of surviving cancer.
Address reprint requests to:Catherine Logan, NCCS, 323 Eighth Street SW, Albuquerque, NM 87102.
NCCS CONTRIBUTIONS TO SURVIVORSHIP These new “semantics of cancer survival” and the broader definition of survivorship and its constituency have emanated from NCCS, and are now being incorporated into much of the lay and professional literature. They represent a major philosophical contribution from NCCS to survivorship. Another major NCCS contribution to the survivorship community has been its networkingof diverse components and fragmented activities into a unified and coordinated survivorship movement. This has created a consolidated voice on behalf of survivors concerns with a strong impact as NCCS represents survivors before Congressional committees, with the National Cancer Institute and with national media. An important part of that contribution has been the development and maturation of national leadership. Through many of the NCCS networking activities, and especially the annual conference, individuals and groups have been provided a structure and impetus to share their
REFERENCES 1. Locan C: We are between 6-7 million strong. NCCS Networker 5:2, 1991. 2. Loescher L, Welch-McCafffey D, Leigh S et al: Surviving adult cancers, Part 1: Physiologic effects. Ann Intern Med 3:411-432, 1989. 3. Hoffman B: Current issues of cancer survivorship. Oncology 3~85-88,1989. 4. Spingam ND: The new breed of survivors. Coping Magazine 3:25-27, 1989. 5. Welch-McCfiy D, Hoffman B, Loescher L et al: Surviving adult cancer, Part 2: Psychosocial implications. Ann Intern Med 3~517-524, 1989. 6. Hoffman B: Cancer survivors at work: Job problems and illegal discrimination. Oncol Nurs Forum 16:39-43, 1989. 7. Crothers H: Health insurance: Problems and solutions for people living with cancer histories. In Proceedings of the 5th Narional Conference on Human Values and CMcer. San Francisco. American Cancer Society, 1987, pp 100-109. 8. Carter B: Cancer survivorship:A topic for nursing research. Oncol Nurs Forum 16:435-437, 1989.
The Cancer Survivorship Movement 9. The needs of people living with cancer in Prince Edward Island.
14. Rowland J. Prehnhry clues: constituent profile. NCCS Networker
Canadian Cancer society, 1989. NCCS newsletter. 1:l-3, 1987. Mullan F: Seasons of survival: reflections of a physician with cancer. N Engl J Med 313:270-273, 1985. Dow KH: The enduring seasons in survival. Oncol Nurs Forum 17:511-516, 1990. Charter of the National Coalition for Cancer Survivorship(NCCS).
3:2, 1989. 15. Websrer’sNew World Dici’onary, 2nd College Edition. Simon and Schuster, New York, 1984. 16. State of the Art Paper No. 2: Issues of cancer survivors and options for OCC involvement. National Cancer Institute(NCT) Office of Cancer Communications (OCC), 1988.
10. 11. 12. 13.
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